Thanks to Laura and news about a newspaper story

Just wanted to say thank you to Laura Edwards(no, not that Laura Edwards) for mentioning us in her blog on her website Taylor is Laura’s baby sister and you don’t need to be around her long to see the passion and drive that Laura brings to life. Currently that passion is devoted to finding a cure for the horrible disease that affects Taylor and many other innocent children in this world.

If all goes as planned there should be an article in Sunday’s Charlotte Observer highlighting our struggle with Charlotte Mecklenburg Schools, barring any huge news stories between now and then of course.

We got an email tonight from Batten parent Danielle Lowden from Raleigh, NC that she plans on attending our fundraiser on May 5th. Thanks Danielle!!!!!


I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

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